EVERY MORNING I
and go through the same
routine. First, I open my eyes
and make sure I can focus
on something, anything.
Then I sit up and see if I can feel my
extremities. Feet? Check. Legs? Check.
And so it goes on up my body. When I
finally get out of bed, I stand still for a
second and make sure I have my balance.
If all of these little tests work out,
it's going to be a good day.
If not, as they have some days over
the past seven and a half years, I resist
the urge to crawl back into bed. I get up
anyway and push myself forward. Such
is life with multiple sclerosis (MS).
My Journey Begins
MS first reared its ugly head shortly
after I gave birth to my second child,
Alex, in 2002. The right side of my face
went numb and I lost hearing in my
right ear. My first course of action was
to go to the dentist, since the numbness
felt kind of fuzzy, the way it does when
you get a Novocain shot. No luck there.
I then went to an ear doctor for the
loss of hearing in my right ear. All the
tests came back normal. But how could
that be? I still couldn't hear.
Then the ear doctor threw me for a
loop by scheduling me for an MRI. I
don't remember now if he mentioned
MS at this point, or if I was so in shock
that I completely missed it.
So off I went to begin my deep-seated
hatred of MRI machines. As I lay there
in the tube on the verge of a panic
attack, suddenly the familiar words of
the Hail Mary ran through my head. I
closed my eyes and repeated them over
and over during the seemingly endless
scan of my brain, neck and spine.
When it was over, I went on my way,
assuming they would find an afflicted
muscle causing the problem.
A week later came the call that
turned my life upside down.
I was at work when the ear doctor
called. I will never forget his words:
"Your MRI is consistent with someone
who has MS." I was floored. How could
this be? I was only 30 years old. Thirty-year-olds don't get diseases like this.
(This just goes to show you how much
I didn't know about the disease at the
time, because that is exactly the age at
which MS often hits.)
SINCE I FOUND OUT I have MS—and even before I definitively had
my diagnosis—the questions I got from most people were "What do
you need?" or "What can I do?"
Well, here are some things you might want to know. They are certainly
based on my own personal experience, but they might provide
you with a different perspective for dealing with someone you know
who has a chronic disease.
Please don't tell me it could be worse. I know it could be worse.
I know my disease is not life-threatening. But it certainly has been lifealtering,
and sometimes that feels just as bad.
Please don't try to compare my experience with yours, your
family members' or your friends'. One of the most frustrating parts
of my disease is that I don't look sick. MS affects each person differently,
so each person's experience is unique. I'm not in a wheelchair.
I don't walk with a cane. Therefore, people often forget that I even have
MS. In fact, when most people discover I do have it, their first response
is often, "But you don't look sick."
And because I don't look sick, people often respond to my symptoms
in terms of their own lives. When I say I'm tired, people often immediately
respond with, "I know. I'm so tired, too."
Please understand that when I say I'm tired it doesn't mean I just
didn't get a good night's sleep. When I say I'm tired, I mean that, despite
a full night's sleep, I wake up every morning feeling as if I've been hit
by a truck.
For any woman who's ever been pregnant, I try to explain it as the
absolute bone-crushing fatigue of the first trimester times 10. For
those who haven't had that experience, the best explanation I've read
was "The Spoon Theory" by Christine Miserandino. It was adapted to
people with MS at this blog: http://sunshineandmoonlight.word
Please just listen. When it comes to my disease, there aren't a lot
of clear-cut answers. So please don't try to give me any. Sometimes I
just need to vent to someone.
I hung up the phone and fell apart—right there at work.
The following weeks consisted of
appointments with a neurologist,
another MRI, a spinal tap and a whole
battery of blood tests to rule out other
diseases. At the end, bruised, battered
and feeling utterly defeated, I was left
with one thing: a big question mark.
My MRI revealed lesions on my
brain—"brain spots," as my kids like to
call them. My spinal fluid did not reveal
MS. My symptoms did. So I had two of
the three markers for MS.
And so it went for the next few years. When people would ask me if I had
MS, I would always answer, "Yes, but
technically I don't meet all three characteristics
for a diagnosis." I felt as if
that answer left me with some wiggle
Every year I would go to my neurologist
for a checkup and an MRI, unless
I had a flare-up. Each time, my husband,
Mark, and I would be faced with
the question of whether or not to start
the steroid shots that might prevent
any further exacerbations. And each
time, we decided to hold off on the
shots for the time being—a calculated
risk, we knew—because we weren't
done having kids. I just wasn't ready to
give up to this disease my dreams of a
In 2005 we had our daughter, Riley.
Since then I've had a few flare-ups,
mostly the same symptoms as always—
numbness, loss of balance, but par for
this course I have been traveling.
Then last October, I woke up and performed
my usual morning routine, but
this time I knew something was different.
My entire left leg had no feeling in
it. I rationalized that I must have slept
on it wrong and it fell asleep. But deep
down I knew that wasn't the case.
I got up and tried to go about my
daily routine. I called my primary-care
physician for an appointment, remembering
that the day before I had twisted
in the car to help buckle Riley's car
seat. That must have been what caused
this, I thought.
No such luck. Within a week I was on
a high dose of steroids and back in my
neurologist's office. Before he left the
room following my appointment, I
asked him, "Do I have MS? Because I've
never been sure if I do since it didn't
show up in my spinal tap."
"Yes, you do," he told me. So there
For the past seven years I had been
in kind of a limbo with this whole MS
thing. Well, now I knew, and it was
kind of a relief and a heartbreaker—
relief finally to be able to name what
was going on, and a heartbreaker
because now there was no talking my
way out of it.
One of the most unsettling things
about this disease is the uncertainty. No
one knows how it will play out. There
is not a day, an hour, a minute when I
don't sit and think about it. It's the
first thing I think of every morning,
the last thing I think of before falling
asleep and too many times to count in
between. You can imagine what havoc
that wreaks on your spirit and mind—especially one that already has lesions
I have tried really hard to keep a positive
attitude throughout this journey
and realize things could be so much
worse. Really, I have. But I'm finding it's
a day-by-day process. One day I feel as
if I can conquer the world and take on
anything this disease throws at me.
The next day I get mad because it's not
fair, scared that I won't be able to chase
my kids around, worried that I'll have
to move because I live in a two-story
house and totally bummed because I
see the way my kids look at me now
and I know they're worried.
Last year my oldest daughter, Maddie,
was experiencing frequent severe headaches.
I took her to the pediatrician,
who ran down a list of questions for
Maddie, one of which was "Are you
worried about anything?" I could tell by
the look on her face that she didn't
want to answer for some reason, so I reassured
her that it was O.K. She looked
straight at me and said, "My mom,
because she has MS."
It broke my heart.
On days like that, the only thing
that gets me through is faith. It's had to.
I don't know what tomorrow holds.
Neither do my doctors. Researchers are
still hunting down that elusive cure.
So that leaves me with faith: faith
that there is a reason I am on this journey,
and faith that I will be given the
strength and surrounded with the right
people to help me through.
I've read my share of articles—including
in this magazine—where people
have spoken of the blessings their MS
has brought to them. I'm not there. In
fact, if I were to chart how I've dealt
with my disease following Elisabeth
Kübler-Ross's grief process, I suspect I
haven't made it yet to acceptance.
I envy those who see their diagnosis
as a blessing. I don't. I'm a mom of
three—soon to be four—who gets angry
when I have to tell my kids I can't play
because I'm too tired, or the heat is
getting to me. And as a very independent
person, I hate asking for help.
But those moments when I feel
my lowest are always when I am reminded—in some way—of Christ's presence.
Sometimes it's a kind word from
a friend, an unexpected visit or just a
momentary sense of calm. Faith is my
security blanket. It gives me something
to hold on to when I'm angry, frustrated
and sad. My faith tells me, "Don't
give up. Hang in there. There is hope."
Following my last flare-up, Mark and I
spent a lot of time talking and praying
about where to go next. At the time
we were planning to try to have our
fourth child. Should we go ahead, or
consider our family complete and start
the steroid shots? It was a decision I had
wrestled with on and off. But I felt as if
something was still missing in our family.
We finally decided to go ahead with
our family plans. The moment I found
out I was pregnant, I suddenly knew we
had made the right decision. I experienced
a peace I hadn't known in years.
Our fourth child is due in August.
That's not to say I'm not very aware
of the fact that there is a higher chance
of a relapse after I have the baby. But as
with this entire journey, we'll cross that
bridge when we come to it.
All I know for sure is that tomorrow
morning I will wake up and go through
the same routine I have for the past
seven and a half years. The rest I'll have
to leave up to faith.
For more information about multiple
sclerosis, visit the National Multiple
Sclerosis Society at www.nationalmssociety.org or the Multiple
Sclerosis Society of America at